- Discussion
- 10.1111/dmcn.14683
Social injustice and intensive therapies in pediatric rehabilitation research.
- Sep 20, 2020
- Developmental medicine and child neurology
- Dorian Wallace + 1 more +1
EDITOR–As a group of researchers in pediatric rehabilitation, we have always been cognizant of health disparities, and more specifically that our clinical research studies have struggled to recruit participants of color. But the target of our research – intensive therapies – made it feel like we were somehow ‘immune’ to the much broader issue of social injustice. After all, our work was seeking to address healthcare disparities by improving the abilities of children with motor disabilities, mostly cerebral palsy (CP). However, we must now acknowledge that our failure to increase racial and ethnic diversity in our treatment populations has actually reinforced healthcare inequities. A US 2011 study found Black infants were 29% more likely to be diagnosed with CP than White infants (https://www.cdc.gov/ncbddd/cp/data.html), and population demographics regarding children with CP indicate that our research samples should be made up of Black children at a rate of at least 30%. This is not the case in our research nor in most of our colleagues. In this way, we directly contribute to institutional racism. Pediatric constraint-induced movement therapy and hand–arm bimanual therapy are two of the most widely researched and efficacious forms of intensive therapies for children with CP.1, 2 These intensive therapies take up a lot of resources and have been driven largely by parent demand. Specifically, they have been used by families who can financially afford additional services for their children with CP. The result is our samples are disproportionately White because data indicates Black children are three times more likely to have limited family resources (http://www.nccp.org/publications/fact_sheets.html). As clinical researchers we have done little to try and right this wrong. We have even failed to consistently report racial statistics when describing our research samples in published findings. In a review of studies on pediatric intensive therapies, racial demographics were reported in 3 out of 66 articles (4.5%). We neglected reporting race because race is a societal construct based on westernized culture’s desire to (falsely) categorize people.3 Does this fallacy make it irrelevant? There is no doubt that the categorization of people has had lasting and continued impacts. Being unable to understand diversity in our samples brings the external validity of our treatment approaches into question and contributes to inequity. The challenge we now face as clinical researchers and practitioners is, what do we do about it? This letter in many ways is to force the conversation with ourselves and all those who investigate intensive therapies. At a minimum, every publication from a clinical trial on pediatric rehabilitation should describe the racial demographics of their sample.3 Next, we must begin to address the real barriers to participation (e.g. loss of income, transportation, time off work) families with limited resources face. Cost of treatment is not the only financial strain associated with participation. Researchers and clinicians must allocate sufficient resources to minimize these obstacles and conduct studies that target and test the impacts of these barriers. In addition, we must face our own biases and challenge many of the assumptions built into the healthcare profession. Implicit bias has been shown to affect other areas of healthcare.4 Is the same true for pediatric rehabilitation? If we believe our science that intensive therapies are appropriate for all children with CP, we must do what it takes to understand the implementation of these approaches across all communities of children with CP. In the words of John Lewis, civil rights leader and congressman, ‘When you see something that is not right, you must say something. You must do something’.5
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